Michaela Odone; Focus of 1992 Movie
Michaela Odone, whose efforts to develop a treatment for her son’s rare disease inspired the movie “Lorenzo’s Oil,” has died at 61.
Odone died at home Saturday of lung cancer.
She and her husband, Augusto, had no medical training but helped develop a combination of olive and rapeseed oils that they used to treat their son Lorenzo’s rare degenerative brain disease, adrenoleukodystrophy (ALD).
The disease, which affects only one in 25,000 people, and only small boys, had been little studied until the Odones focused attention on it. ALD destroys the fatty sheath (called myelin) that surrounds and protects the body’s nerves. After the myelin is gone, the degeneration of the brain and the nervous system is both relentless and inevitable, with death likely within three years of diagnosis.
The oil stopped the progression of Lorenzo Odone’s disease and allowed the boy, once in a vegetative state, to communicate slightly with hand signals.
Researchers initially were skeptical, but clinical studies showed that the treatment worked about half the time if administered in the disease’s early stages.
Lorenzo, now 22, is “holding his own,” Augusto Odone told the Associated Press by telephone Sunday. “He looks healthy, but he hasn’t recovered any functions in a big way.”
Augusto Odone said the constant care his wife provided to Lorenzo took a toll on her health.
“It was her sacrifice for Lorenzo. She was with him 16 hours a day, continuously,” he said. “She did not go out. We did not entertain people. We did not travel. We did not take vacations. It wore her out.”
In the 1992 movie, Michaela and Augusto Odone were played by Susan Sarandon and Nick Nolte.
“Because ‘Lorenzo’s Oil’ tries so hard to be faithful to the Odones’ experience,” Times film critic Kenneth Turan wrote in reviewing the motion picture when it debuted, “it does not elicit the conventional feel-good response these kinds of movies habitually offer. Rather . . . it celebrates the struggle, offering a harsh dose of honesty and reality.”
In addition to Augusto and Lorenzo, Michaela Odone is survived by two stepdaughters, two sisters and a brother.